A growing national conversation around the urgent needs of rare disease patients is shining a spotlight on the realities desmoid tumor patients know all too well: research moves slowly, but desmoid tumors don’t.
In a recent Newsweek article titled “Research Moves Slowly. Rare Diseases Don’t—So Patients Aren’t Waiting,” rare disease advocates shared how systemic barriers delay progress, while patients face aggressive, life-altering conditions with limited treatment options. Desmoid tumors—classified by the World Health Organization as “intermediate (locally aggressive)” soft tissue tumors—fit this reality exactly. They don’t metastasize, but they can be debilitating, invasive, and unpredictable.
The Desmoid Tumor Research Foundation (DTRF) has long been at the forefront of disrupting this status quo. Founded in 2005, DTRF is the leading foundation in the world focused on desmoid tumors, advancing innovative research and uniting a global network of patients, clinicians, and scientists.
From launching the only virtual tumor board dedicated to desmoid tumor cases, to funding high-impact translational research, and advocating for drug development—DTRF’s efforts reflect the urgency of the disease and the resilience of its community.
As the rare disease space evolves, DTRF continues to build momentum. The Foundation invites patients, researchers, clinicians, and industry partners to join its mission and help close the gap between diagnosis and cure.
Media Inquiries
Chaney Pope
Communications Manager, DTRF
chaney@DTRF.org
